WellHappy

The last month or so has been pretty hectic, they were always going to be with the restructure of the NHS and the VIK project at YoungMinds coming to an end after four years.

But in the last few weeks i have managed to get a lot done!

After launching the app first at the Healthcare Innovation Expo and then at City Hall i had a few days to finally relax and then bounced right back into work mode.

app launch

Launching the WellHappy app

I attended an iBehave meetup at Google Campus around using tech to increase condom usage in young men. Devika, the winner of the SexFactor2012 awards, came with me and together we worked together with a team of other people from tech, third sector and health backgrounds to come up with solutions. As someone who is much more familiar with the mental health side of the app we developed (plug: download here!) it was good to have an expert and friend with me.

You can watch a short video made about the event here.

I also made a short film for YouthNet and TheSite about mental health and employment. I’ve seen a sneak peek but i’m afraid it has not been released just yet. When it is i will post it so watch this space.

And two last little things i thought i would mention..

Firstly my app was featured in the Guardian today after they interviewed me recently. You can read it here.

Secondly, more for those in London, the WellHappy app will also be featured in the Evening Standard on Thursday so make sure to look out for it!

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Mapping mental health

Last year young people from organisations including YoungMinds Very Important Kids (VIK) project, Right Here Newham and the Peer Outreach group at the GLA got together to discuss one of the last taboos: mental health, with a particular focus on how it affects them as Londoners. Their work led to the London State of Mind manifesto, a document put forward to advise decision makers about what is important to young Londoners and what improvements they want to see. This was launched last year at city hall and quickly gained cross-party support.

One point is of particular importance and has led to my job being created. Point five, “tell us where we can go when we need to get help”. I am currently working for YoungMinds on secondment to NHS London and we are working on a very exciting project in response to this.

We have decided to develop an app and online space to help young people find out what help is available in their area.

While this started off at looking purely at mental health services we soon realised this wouldn’t be enough. Mental health is not something experienced in isolation, especially for young people, and has large overlaps and affects areas such as relationships, physical health and substance use. Therefore we decided to embark on a somewhat more challenging task: mapping wellbeing services in the capital and helping young people to find them as well as producing materials to support young people along the way.

Just over two weeks in and we have already accomplished a lot. We have begun mapping services and meeting with young people and organisations from all over London. We will continue to engage with as many young people as we can as I believe participation is key to this being a useful and hopefully successful tool.

We want this to be more than just a wellbeing “Yellow pages” and for that we need your experiences and recommendations of services. Your local knowledge and experiences are invaluable to making this work so tell us about anything you think might be of interest that you know about and let us know what services you use.

So what next?

I will be blogging at YoungMinds and at MyHealthLondon on a fortnightly basis, keeping you up to date with what we’re doing and how you can help.

We will be running consultations with young people, the dates aren’t fixed yet but if you’re interested in getting involved please email me at Katherine.Cormack@london.nhs.uk.

Kat Cormack

 Read the full London State of Mind manifesto here.

A quick update

I thought i should probably make a quick update about some of the exciting new things i am doing that i haven’t shared with you all yet.

Firstly i have finally left my job in order to go freelance with my Mental Health and Social Media work. I will still be a VIK with YoungMinds as well as a young advisor for the Royal College of Psychiatrists and a media and communications volunteer with North Essex Foundation Partnership Trust.

I will now also be working with Katie Bacon, founder of Online Youth Outreach which is something i cannot wait to get properly started with. Over the next few months I will be facilitating and speaking at a few events  which i will talk about more closer to the time.

Alongside all these things i will also be reunited with Bill Badham and his wonderful team at Practical Participation, working with Puzzled Out (the CAMHS mapping service) and hopefully with a few universities, advising on course content and even lecturing as a service user.

#TalkOut with young people

#TalkOut with young people

Last Sunday saw our first ever live discussion on Twitter for young people affected by mental health problems. The title of our talks is #TalkOut and will be something we run on a regular basis alongside Youth Mental Health (@time4recovery) and Talk Out (@Talk_Out).

We  decided to look at the impact of social media on mental health issues and recovery and it was an undeniable success, so much so that it was very difficult to keep up with multiple conversations all at once!

We had a real mix of people too, Twitter cutting through hierarchies often found in clinical settings and opening up the door for young people and adults to talk openly and honestly about their experiences of mental illness and the internet.

This is of course something that is of huge interest to me personally. For me the internet had a powerful role in my mental health both in terms of illness and recovery and i think it is an area that needs much more attention given to it.

All too often, or in fact from what i see in mainstream media, the internet is reported as a dangerous place, a cyber wilderness or even wasteland populated by Innocent children and Bad adults. Pornography, gambling, bullying; these are all things that make headlines and sell papers (or get more “hits” online) but they are not the whole story, not by a long shot.

For me (and judging by Saturday’s conversation a lot of other young people) the internet was a safe place and at times the only place i could go. I did not abuse the anonymity granted to us when we step into the World Wide Web, i used it to use a voice i could not find IRL or “In Real Life”. In fact it was on the internet, in one of those infamous chat rooms the tabloids love to condemn that i found others like me, first opened up. It was because of strangers i met online that i sought help for my mental health problems in the first place.

Stories like these don’t sell papers but they do have a place and they do deserve to be told. The internet is one of, if not the, most powerful tools we have created and it has almost infinite uses, and i can’t stress this enough, some of them are good, some of them save lives.

Similarly i saw an inspirational talk on TED recently about a text messaging service in the US which has had resounding success:

http://www.ted.com/talks/nancy_lublin_texting_that_saves_lives.html

We talked about how the internet and social media had affected our own recovery:

“[It] took me years to seek help for #mentalhealth problems, only did because friends online told me to and told me how #TalkOut

And what could be done to help others:

“Social Media not only helps by providing a platform for awareness & support accounts but also for ppl to talk to each other/friends #TalkOut

“I think if schools had a forum for students to discuss MH it would benefit pupils 🙂 #TalkOut

In my experience somehow utilising social media to help pupils would be great, I know it would have helped me enormously #TalkOut

You can read more comments from #TalkOut here at Storify:

http://storify.com/Time4Recovery/first-talkout-tweet-up-asks-does-social-media-help?utm_campaign=&awesm=sfy.co_h03g&utm_source=t.co&utm_content=storify-pingback&utm_medium=sfy.co-twitter

Overall we had some amazing, insightful and even inspirational conversations around the internet, social media and recovery and made some new friends along the way.

“Perhaps now’s the time to change this. A community is louder than 1 advocate, more resounding as one united voice #TalkOut

In the future we are hoping to hold bi-weekly Talk Outs on Thursday and Saturday evenings, please follow us at @vikproject or me directly at @KittyCormack and remember to look out for and use the #TalkOut hashtag.

My experience of CAMHS

Through my work with YoungMinds i am often asked to think back on my time under the care of my local CAMHS service. I used to think of it is a a big portion of my “ill” experience, it did after all span three of the most mentally ill years of my life. From the age of 14 to 17 i was seriously unwell and those years were punctuated with hospital visits, feverent and frequent self harm, plunging weight, self medication and a lot of sadness.

However it has been almost 5 years now since i left CAMHS..not so much because i was supposed to, not because i was “functioning/normal/well”, whichever one of these vague concepts you want to use, but because to be perfectly honest i was fed up and wanted nothing more than to never have to sit in one of those drab waiting rooms ever again or have another appointment where i was asked “and how does that make you feel?”.  I was well and truly fed up.

Looking back i think it’s a shame that my experiences caused me so much resentment and disillusion with mental health services. On paper i had a relatively good experience, over those three years i had therapy, fairly frequent meetings with a psychiatrist, a short course of CBT and tried a range of medications. However just because in black and white it looks good it unfortunately does not mean that what you get is helpful or productive and i certainly did not emerge from CAMHS a fully functioning or happy girl. Since then i have spent the last four plus years fending for myself with very little input from mental health services (other than in crisis situations which have been very mixed experiences in themselves) and have jumped from medication to medication, sometimes winding up heavily dependent and other times swearing off pharmaceuticals completely. That and i have been lucky enough to have the love and support of a wonderful family, friends and partner who have done far, far more for my mental health than trained professionals ever have.

The reason i am blogging about this subject today however is because of a specific question i was asked recently by a member of YoungMinds staff for a questionnaire around IAPT. The question was “What has been the best experience you’ve had in terms of communication and overall relationship with a mental health professional?” and the more i thought about it the more i drew a depressing blank and found myself unable to answer that question.

I tried to think back to my experience of CAMHS and the professionals i encountered in it as a service user and although the memories grow increasingly hazy as time passes i definitely remembered the ridiculous number of people i saw during that three year period.

One of the biggest problems i found with my care is that i felt i was constantly passed from one person to another. I had a therapist for pretty much the duration but i didn’t feel i could talk to her, i didn’t feel she understood me, not just because of my mental illnesses but also because i was a young person. She tried and she was a lovely person who i hold nothing against but she frustrated me with what felt like inane questions; “and how did that make you feel?” and questions i had no idea the answer to “what do you want from treatment/life?” which seemed like huge questions for someone who couldn’t see herself living until next week. I wanted her to coax out the secrets i was hiding from everyone and to help me build up trust in sharing those but i felt my trust completely destroyed when they told my parents about my Anorexia and Self Harm (they didn’t do it behind my back, they said either i had to tell my parents or they would and i didn’t have the words or the ability to voice these, i was scared and didn’t want my coping mechanisms taken from me, it felt like a bereavement when they were and in hindsight i think they could have handled the situation much better and that they should have consulted me more).

Alongside her i saw a psychiatrist every six weeks or so, these were painful and awkward sessions involving my parents who i wanted to protect from what i saw as my madness, my badness. I would sit in the corner pulling out clumps of my hair, scratching the skin off my arm and not making eye contact with anyone. The psychiatrist changed every six months and so every six months a new one came along who i had to re-tell my story to which was usually very distressing. I quickly learnt to keep quiet and avoid building up any kind of relationship with them because i knew that sooner or later they would be gone and i would have to start again and i could never predict if the next one would be helpful or do more harm than good as some did. They were a mixed bunch, “the psychs”, some were young and inexperienced, but i liked these ones more, even though i quickly found that i often knew almost as much as they did and they also seemed a lot more genuinely concerned for me, shocked that a once shy but friendly, well achieving girl could have been reduced to a bleeding, crying, shaking creature in the corner of the room. The older ones seemed to be more detached from my life, i found them patronising and often felt like screaming at them, instead biting my lip.

One particular experience stands out; I was put on a medication that soon made me highly aggressive (for anyone that knows me they know this is totally out of character), suicidal and full of nervous energy i just could not contain (i spent many nights frantically scrubbing the kitchen or pacing through the house at 4am). I went back to my psychiatrist for an emergency appointment, i told him in no uncertain terms that if i stayed on this medication i would end up harming myself or someone else. I was desperate to be off it. His response? Would i like to try a higher dose? I could have, and probably did, cry.

There were others too, numerous social workers who popped up in sessions unannounced from time to time (to this day i’m not sure what their purpose was), psychologists,  a short but lovely stint with a CBT therapist and then the numerous nurses and psych teams i saw during the brief hospital admissions (i was always discharged straight away and never kept in even though this meant slow, painful months of house arrest and my parents babysitting me, taking me into work with them and my school monitoring me so closely that i felt more and more like a freak) and GPs..a subject which could easily take up a whole post in itself!

It’s hard to remember them all, i was so ill and their part in my life and health was so fleeting that i have to look back at old journals for any real detail about them. But what i remember is that however fleeting their presence they still had what felt like so much control over me. Sitting there in their offices i was a small, almost mute thing, shrunken by depression and Anorexia, and there they were, the Psychiatrist with a capital “P”, the one with the power to take me on or off medication, to increase dosages, to write about me in files that i couldn’t see and which are still kept somewhere to this day and to change what diagnosis i was labelled with..a massive thing when your sense of self and identity is so fragile. Very little of this was thoroughly discussed with me, they had their hefty medical books and their prescription pads and i complied. I do not remember a care plan, there was certainly no care co-ordinator or advocate. I remember a lot of decisions being made about me over my head without my input. I know i was not the easiest person to deal with but i don’t feel they reached out as far as they could. I was their 9 o’clock, i didn’t feel like a person, certainly not one that knew what was best for her or could be involved in any of these decisions. I wasn’t even allowed to look after my own medication, the drugs they chose, instead i had to, at the age of 17 ask my mother for it every morning like a good girl. I felt that very little of my treatment was about growth and recovery, it was more about containment; containing me and my behaviours which certainly smacked more of punishment than nurturing.

But anyway i have rambled on for far too long now and i certainly do not want to scare anyone because this after all my own personal experience, just one frustrated girl. I think what gets me is that it could have been so good, it could have been so helpful had someone reached out to me in the right way and had the whole thing been more stable, less about meds, side effects and silence and more about honest, open communication.

I wish i had felt able to speak to them and divulge more of my worries and fears but if you patronise a young person, or talk over their heads at their parents instead of looking at them it’s very unlikely that you’re ever going to build a healthy relationship. The relationship between a CAMHS professional and a young person needs to be very much a two way thing with a good dose of respect and trust on either side if it is going to be really helpful.

So i think if i had something to say to CAMHS professionals it would be to listen. Not only to the words that come out of our mouths, which may sometimes but stumbling, confused or angry, but also listen to what we’re not saying. Notice when we bite our lip when we want to speak and make sure we are involved in our care. Being involved is empowering, especially when you feel you have no control over anything in your life. And please try and empathise.

We are only human after all.

First published 28th February 2011:

http://www.vik.org.uk/2011/02/28/my-experience-of-camhs/